Improving communication of diagnostic uncertainty to families of hospitalized children.

Objectives: Diagnostic uncertainty is not reliably communicated to patients and caregivers. This study aims to identify barriers and facilitators to effective communication of diagnostic uncertainty, including development of potential tools and strategies for improvement, as perceived by healthcare professionals and caregivers.

Methods: We completed structured interviews with providers and caregivers of hospitalized children with uncertain diagnoses (UD). The interview guides addressed barriers to communication, key components for communication of uncertainty, and qualities of effective communication. The interviews concluded with respondents prioritizing potential interventions to improve communication of uncertainty. Interviews were audio recorded, transcribed, and independently analyzed by two team members to identify common themes.

Results: Ten provider and five caregiver interviews were conducted. Common barriers to communication of uncertainty included time constraints, language barriers, and lack of clear definition of UD. Caregiver suggestions for improvement included sharing expectations of the diagnostic process and use of both written and visual communication tools. Interview respondents favored interventions of a sign summarizing the key components of diagnostic uncertainty for display in patient rooms and a structured diagnostic pause during daily rounds.

Conclusions: We identified several potential interventions that may enhance communication of diagnostic uncertainty and better engage patients and caregivers in the diagnostic process.